Summary: Robert F. Kennedy Jr., Autism Data Platform, and Controversy

✅ What’s Actually Happening

• No official autism registry is being created, per HHS and NIH.
• The NIH is developing a real-world data platform to link existing medical datasets for autism research.
• The goal is to support research and reduce redundant data purchases.

❗ What Sparked Confusion

• An April 2025 CBS News report referred to the effort as a potential “registry.”
• NIH Director Dr. Jay Bhattacharya later clarified that it’s a data integration platform, not a registry.
• It’s unclear whether the use of the term “registry” was a misstatement or misunderstanding.

📌 Privacy & Ethical Concerns

• The Autistic Self Advocacy Network has raised concerns about:
• How autistic individuals will be identified in datasets.
• Whether personally identifying information will be protected.
• If there will be an opt-out option or user consent for data use.

📆 Research Plans and Timeline

• Kennedy plans to study environmental causes of autism, although most experts believe there is no single cause.
• 10–20 external research groups will receive grants and data access.
• Initial timeline promised results by September, but Kennedy later said only “some” answers may be ready.
• Bhattacharya emphasized that scientific timelines are uncertain.

🗣️ Controversial Comments

• Kennedy referred to autism as a “preventable disease” and made statements about children with low-functioning autism.
• His remarks were criticized as stigmatizing and insensitive by many in the disability community.